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Welcome to Dementia Talking Point! Find out more and say hello.

Discussion in 'Welcome and how to use Dementia Talking Point' started by SophieD, Oct 18, 2019.

  1. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,443
    London
    Welcome to Dementia Talking Point :)

    If you have dementia, or care for someone who does, you're very welcome to join our community and get support from others. Find out more about how to join and say hi to our friendly community on this discussion!

    Finding out more

    If you've got questions about how to use Dementia Talking Point click on these links below.
    • You can find answers to frequently asked questions here.
    • Our Help videos will show you how to navigate the different areas of Dementia Talking Point.
    • We also have a Quick Guide explaining how to use Dementia Talking Point including logging in, posting, replying, checking private messages and searching.
    • Also we recommend having a read through our Guidelines which are some useful tips and things to remember when posting.

    Connecting with others

    Head over to our list of forums to find people who are in a similar situation, people at a similar stage of dementia or an information topic that interests you.

    Here are some tips on how to post a reply or start your own discussion...

    1. When you're in a forum, look for the blue "Post New Thread" or "Reply" buttons at the top or bottom of discussions
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    2. To start a discussion, type a title, add your message and choose 'Create Thread'.


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    3. To add a reply just add your message and choose "Reply"

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    Any questions?

    If you have any questions about using Dementia Talking Point, you can email us on talkingpoint@alzheimers.org.uk or Use our Contact Form - we're here to help.

    Saying hello

    This is our welcome thread - the place many members start. Our volunteer hosts and regular members are here to say hello to you and to welcome you to our community.

    Why not tell us a little about your experience and how you'd like Dementia Talking Point to help you?

    Whatever you're facing today, we hope you find our community to be helpful and supportive.

    Sophie :)
     
  2. robertk

    robertk New member

    Oct 17, 2019
    7
    #2 robertk, Oct 19, 2019
    Last edited: Oct 19, 2019
    Hi, We are both in our mid seventies, I am Robert and my Wife, Carol is suffering first signs of dementia, she has been tested and had an MRI which shows 3 mini strokes, ie vascular dementia, at the moment she asks questions sometimes within 10 minutes of each, but these just minor questions like what day is it or is it a swim day etc, on the odd occasion she will put things in strange places, other than that she seems fine, still can cook a meal but mainly just keeps dusting over and over again. I don't know how to help her, will she get worse, should I get a memory aid for her like the Mem-x voice recorder or will she think I am over reacting ??, please help
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,842
    Hi & welcome to the forum, there are lots of great forums here on TP. You will find a search bar & early stages of dementia will give you advice from the Alzheimer’s society posts & others experiences.
    It can feel overwhelming when first diagnosed but with the wealth of experience & knowledge on here I hope you will find the information to help you. I’m sorry but my folks are of a different generation so no internet or technology experiences in their dementia journey.
     
  4. robertk

    robertk New member

    Oct 17, 2019
    7
    Thank you for your reply, looks like my Wife has a difficult journey ahead
     
  5. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    Welcome to the forums @robertk.
    My partner has vascular dementia too, and at first that involved minor changes we put down to her stroke. I don't know whether your wife would accept a voice recorder, but everyone is different, so if you think she would be amenable then give it a try. C dislikes the whole idea of having dementia, so I just put everything down to her stroke to sweeten the pill as it were.
    It may be worth asking your wife for Power of Attorney in case you need to take on more responsibility for her financial affairs or her health as the condition progresses. Some people also grant their spouse who has dementia the same power just to make it easier and fairer. Age UK can advise on the ins and outs of that. If you have a good carers support centre or a memory café nearby then they can be good sources of support, courses and advice.
    These links may be helpful to you.
    https://www.alzheimers.org.uk/find-support-near-you
    https://www.alzhttps://carers.org/heimers.org.uk/about-dementia/types-dementia/vascular-dementia
    https://www.ageuk.org.uk/

    Sorry if that is too much information in one go, feel free to start your own thread whenever you are ready to ask more specific questions, you will find a lot of support and advice here.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,842
    Each persons on dementia journey is a personal & individual experience. Most people on the forum have had problems & issues & experiences they want to share. Many more don’t & those people haven’t sought help on this forum.

    It’s a good place to vent & find support & advice.

    my advice is baby steps... take it hour by hour & it’s a little easier at times, heck I even take it minute by minute sometimes!
     
  7. Happy days47

    Happy days47 New member

    Oct 21, 2019
    6
    Hello fellow people,
    I'm new and finding out it's cruel world. My mum got attacked had her head stamped on, and this brought a mild cognitive into a whole new world, she's now in a care home and losing everything. It's a nitemare of a constant what is next. She's now been diagnosed with vascular /alzheimers. It's heartbreaking. 1yr on and only just starting to comprehend everything.
     
  8. Happy days47

    Happy days47 New member

    Oct 21, 2019
    6
    We my brother and I have finally got deputyship. Only 9months yippee
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    Hello @Happy days47 and welcome to DTP. It can take a while to get your head round things. Well done for getting the deputyship. I did this for mum and its a complicated job.

    Do have a mooch around the forum. I see that you have already started to make posts, which is great. Do remember that not everything you read about happens to every person with dementia.
    :)
     
  10. Barry from Canada

    Barry from Canada New member

    Oct 24, 2019
    1
    Hello everyone,

    My 80 year old wife was diagnosed with AD two years ago and is now well into the middle stage, but she is still in denial. She admits to memory loss, but thinks it is normal aging and that me memory is remarkable (although it is also fails me too often).

    I am English but moved to Canada 52 years ago and lived on the West Coast for 50 of those. When my wife was diagnosed with Mild Cognitive Impairment, we moved to the East Coast to be close to one of our daughters (and the other is now only two hours away by air compared with 5 hours before). It is great to have that daughter's support, but it means we have no friends of our own age here, and with my wife's AD it is difficult to make any new ones. She is in denial and is not interested in going to an activity centre. She, just stay at home, and spends hours lying down resting or sleeping and reading. She does a little cooking, but I am gradually taking that over in addition to the other household chores.

    I won't go into greater detail here, except to say this forum appears better than any I have checked in North Amrica.

    What I most wanted to say though, is that, having felt a bit stressed out recently, I feel much better after reading some of posts here and knowing so many others are in the same boat. In fact, many of you are far worse off with partners that are further along the road than mine.

    Best wishes to all of you, hang in there and keep up the most important thing a lifelong partner can ever do. As someone else said, it could have been me that was being supported by her.
     
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    Welcome to DTP, @Barry from Canada. It's good to see you have found the forum and it has brought you some comfort. I'm not sure if there are memory cafes or anything like that in Canada. https://alzheimer.ca/en/Home/We-can-help might be of use to you and we do have a few members over your way so if you add Canada as your location you should find some local supporters.
    When you say your wife in partial denial I know what you mean, my partner has vascular dementia diagnosed after a stroke and it is easier for her to accept her problems are linked to the stroke rather than dementia. She comments on my memory too, which is not great some days due to having to remember for both of us as a man at a carers group put it.
    Stay around and ask for advice or just let off steam as you need to.
     
  12. Marvin75

    Marvin75 New member

    Oct 26, 2019
    1
    Hi

    I’m new to the site, I am currently caring for both of my parents. Dad has Alzhiemers & my mum vascular dementia. Drop me s line & say hello would be nice to chat to people in the same boat as me so I know I’m not alone x
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    Hullo and welcome to the forums @Marvin75. Sorry you have to look after both parents with dementia on your own. You will find support here from others who are dealing with similar things.
    Feel free to start a thread in "I look afters someone with dementia" to give us more about your struggles and to ask for specific help. You can also join in any informal chats in the Tea Room section.
     
  14. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,304
    Nottinghamshire
    Welcome to DTP @Marvin75

    You're definitely not alone here. I looked after both my parents with dementia but mum first and then dad - not at the same time.

    As @nae sporran says - start your own thread when you're ready and others will join in.
     
  15. Lilysplanet

    Lilysplanet New member

    Oct 26, 2019
    2
    Thank you for having me. I'm new to all this but so grateful to have found you. My lovely mum who is very ill has gone into intensive care. She looks after my 89 year old dad who has lung cancer and early (or so we thought) dementia. She has breast cancer and many many other illnesses effecting her bowels and her ability to move her arms any higher than her waste. Because she point blank refused to have help in the home due to not liking others touching her things or telling her how to do anything we now find ourselves in a distressing situation where we do not live close to them but Im staying with Dad and we are taking him to and from the hospital which is miles away. He is much much worse than we thought. He constantly pulls his oxygen off and we are at our wits end to know how to cope with him let alone mum. Sometimes he is normal and you can have a great conversation with him about the old days. His short-term memory is however shot to bits and he misses mum so much and relied on her for everything that now he cries all the time and is extremely agitated. We love them both so very much. We promised we would never put them in a home but the three of us all have health problems which need attention all the time where we live and we do not know what to do to get help at home. The guilt of not coping is terrible. I suffer from anxiety disorder depression so I'm trying to keep a lid on it so my brothers can concentrate on getting help. My question is we were finally put in touch with help but are still waiting for a call back. How long does it take to get help when we have both of them with cancer and dad with dementia please? I do not want to suddenly put my lovely dad into temporary care it would kill him as he knows what's going on I'd like people to come in but I know we will be for it when mum comes out. Either way it's awful.
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    Welcome to DTP @Lilysplanet. You have so much going on there's not much I can help or advise you with, sorry. I know others have recommended McMillan nurses to help carers as well as patients and they might be able to advise you. https://www.macmillan.org.uk/
    As for Social Services, they can take up to 4 months to respond to a request for a carers assessment and a care needs assessment, but the hospital should have its own social work team and they sorted out a care package for my partner inside 3 weeks when she needed them.
    As a sufferer of anxiety and depression myself I know how hard it can be to deal with dementia and caring too, but if your mum refuses help I'm not too sure what the position is. The national dementia helpline is the only other place I can think of to talk through the ins and outs. https://www.alzheimers.org.uk/get-support/national-dementia-helpline
    There's others with more experience and knowledge around who can help, but I just wanted you to know you are not alone.
     
  17. Tinamaria

    Tinamaria New member

    Sep 6, 2019
    3
    hello everyone my name is Tina im 49 and I care for my husband who is 57 and has sub cortical vascular dementia I joined the group because the people on here are going through the same as me caring for someone can be a lonely road if you have no one to talk to or ask advice
     
  18. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    Welcome to DTP, Tina. It can certainly be a lonely road sometimes, so it's good that you found us and have found some support already. If you need to start a thread to ask for advice then please do so in "I have a partner with Dementia" There's a wealth of information and knowledge here.
    If you enter your postcode into the search box at https://www.alzheimers.org.uk/find-support-near-you or Http://carers.org you should find some memory cafes and carers groups who can also make you feel less isolated.
     
  19. Lirene

    Lirene Registered User

    Sep 15, 2019
    133
    Welcome Tinamaria, you can talk and ask anything at anytime and someone is always here to help. We are all basically in this same small boat rowing like mad.
    Love and hugs xx
     
  20. xPollyx

    xPollyx New member

    Oct 23, 2019
    3
    Hi everyone my mum who's 78yrs old was diagnosed with Alzheimer's a few months ago, we have all known for around 5 years that my mum was suffering from dementia. My dad is her main carer he's 81yrs old he's absolutely exhausted mentally caring for my mum. My mum has hallucinations, paranoia, she's suspicious of my dad and I, she's irritable, argumentative and so on. My parents don't get on I can't remember a time when they did. My mum is raking up stuff from over 50 odd years ago and adding bits on to it. I was over to see them today, took flowers for mum and cake to have with coffee, as soon as I was in the door she started moaning and being nasty about my dad who was in the same room and as usual when I don't engage with her about it or take her side she starts on me. I'm at the point now where I don't want to go over and see her. I'm relieved to back home away from it all. Apologies for the rant on my first post.
     
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